I am going to admit something very shameful. I didn’t feel comfortable around people with special needs….especially those with cognitive delays. I would be at work at a local pet store, and sometimes people with Down Syndrome and other cognitive challenges would be bussed in to admire the animals. I hated it. I would be working, and one of them would invariably get up into my personal space, and I would feel extremely uncomfortable. I am not particularly proud of this at all.
The other thing that I am not proud of was the fact that I somehow picked up a perfectionism related to Intellect and Creativity. Now, it mostly concerned me and how I personally performed and not so much with how well others did. However, the two above issues collided one day at about 11:19 pm in the hospital in 2004.
I was pregnant with my first born that year. Our doctor recommended genetic counseling as well as the standard 20 week ultrasound. My husband and I were both extremely concerned about having a child with Down Syndrome. My husband’s family had a boy with Albinism, so genetic issues were not off the radar. However, at the genetic counselor’s office, we discussed what the odds were for my age….1 in 290. Not bad odds. That was fairly comforting.
When we went to the appointment for the ultrasound, we were of course thrilled to find out the gender of our baby. It was going to be a boy in my mind, and my husband really wanted that son. He’s Sicilian. It’s par for the course! I was surprised when the counselor said, “There’s the vulva.” And for a split second, I wondered what part of the boy the vulva was. Yes, I know, that was dumb. So while I was thrilled for a daughter, I could tell my husband was deflated. That deflation was put to the side, however, after what the counselor saw next. There was a calcium deposit on the heart, which was a soft marker for Down Syndrome. He then said that he needed to check the nasal bone.
Now I don’t know about you, but I have never even thought about a nasal bone. Apparently, the nasal bone length or lack of it (I don’t remember which) was a strong marker for DS, giving you a 1 in 3 chance of having a child with this disability. So for ten of some of the most excruciating minutes of our lives, we waited until our dear daughter decided to show us her nose. (She is STILL that difficult today when trying to get a smile in a photo.) Finally, she turned, and we saw a well formed nasal bone. We knew then that we were going to have a typical child. All was well.
Fast forward to 11:19 pm on that fateful Thursday. I had just given birth almost four weeks early to our precious daughter. I was in such a cognitive haze after pitocin, an epidural, oxygen,some antibiotics and….well……birth, that I did not realize the ramifications of what my husband was about to say to me:
“If you heard bad news, would you want to hear it before or after you napped?”
My first thought should have been, “Whatcha talkin’ bout, Willis?!” But no, I said, “Well, I guess I would want to hear it right away.” He then said to me that they thought she had Down Syndrome. At first I thought he was joking. But then I sobered up enough to realize that this was NOT something he would joke about.
Other than the fear of your child dying, the thing I most dreaded happened, and it changed our lives forever.